Help appreciated please..symptoms not easing

[August7]

My journey with PMR has been eventful. I started off a year ago with severe back pain and investigations found I had a bulging thoracic disc T8/T9, but apparently not anything that needed intervention. I was very tired, working and looking after my 31 year old son who has Autism and Learning difficulties ..it is just the two of us so I’ve always been used to going full pelt and juggling.

I started to get a lot of neck stiffness, very bad shoulder stiffness and pain, spinal pain and bilateral hip pain. As I already have spinal osteoporosis I wondered whether this was all connected.

GP at a loss, bloods etc not revealing much except for some discrepancies in white cell count.

The GP did refer me to a rheumatologist and he thought ‘Suspected PMR’. I was put on oral prednisolone of 15 mg daily, (really did not want to go down that route).

symptoms did not ease that much and a crp blood was very raised however plus Monocytes off the scale.

Since then I have battled on alone really. It’s difficult to see a GP as they are so busy and different ones all seem to have a different perspective. I’ve been waiting for a rheumatology follow up since April and finally have one for November.

The rheumatologist had previously said he thought I might have to go on methotrexate if the prednisolone did not ease the symptoms. I have tried reducing down by1 mg a month but every time I get to 10 mg the symptoms are vile.

I am back there now, not sleeping due to the pain in my shoulders, neck, spine and ribs, unable to do my normal walks (which used to keep me sane) I feel like my shoulders and neck are being pulled apart on movement. I spoke to a specialist nurse and she said to increase the prednisolone to 15mg which I have today.

I would appreciate any advice or help, I feel so very alone and it doesn’t help that the medics seem to differ in their treatment. I’m not sure I can carry on, I’ve gone from managing all to simply trying to get through the day and it terrifies me, I have to be there for my son.

Methotrexate seems a terrifying prospect, but chronic pain every hour of the day is taking its toll.

Apologies for such a negative post. I think you all sound amazing from the posts I have seen!

[PMRpro Ambassador]

Hi and welcome! It isn't at all a negative post - it is reporting a very negative experience and I think you are being failed badly by the medics.

Pred only works if you are on enough - and MTX really isn't the answer UNTIL things are properly under control with pred, 15mg is the bottom end of the recommended starting dose range which is 12.5 to 25mg, exceptionally 30mg. And you won't be able to reduce the dose if you haven't got things under control to start with. I think you need to try a higher dose - if only to see if enough pred sorts it out better. Once you have done the springcleaning, you can go back to dusting!

It is very poor that you weren't seen sooner to see if the moderate dose of pred had achieved much, Have you seen a doctor since they found the raised monocytes? They ARE a sign of autoimmune disease but not often raised in PMR - more often in lupus, although in some people it can be a response to steroids.

We aren't that amazing and some of us have had a long time to get this thing sorted - and for many, to educate our doctors! Hopefully we can get some ideas about your problems and you can go to a GP and demand something better. Because this isn't just about you, it is about your son too, and the stress of that responsibility is probably not helping the overall picture.

[August7 in reply to PMRpro]

Thank you, I finally feel someone understands. I’ve got to the stage where I feel I can’t face ringing the surgery as my condition just seems negated.

Earlier in the journey when I was having a flare up, a GP told me I must have flu! I had no temp or signs of flu and he auscultated my chest whilst I was wearing a full winter coat over my other clothes …impossible.

Even the nurse today when I read my notes had put that she had advised 15 mg but that was not ideal to go ‘back up’. It’s as if I am making it up, and the pain is so very real as you know.

I imagine I shall have to try and keep a clear head on seeing the rheumatologist as I understand he is doing a trial on methotrexate on patients not responding to prednisolone. Meanwhile the nurse is ringing me next week, I think with the idea of reducing it back down to 12.5 mg.

[PMRpro Ambassador in reply to August7]

As I say - only possible once things are under control. Funnily enough,  piglette was told by her doctor originally she had a virus - for an awfully long time!! It might be PMR - but there are other things that may be making it worse and the rheumy wants to get his brain in gear.

[August7 in reply to PMRpro]

Thanks, I totally accept what you are saying. I need to get my big girls pants on for that appointment!

[sidra1968 in reply to August7]

Hello! Yes, please bring notes and rehearse what you are going to say and be prepared to stand your ground, they are only humans and they work for us. I have had to simply refuse their instruction, said "nope, I refuse to do that, I am NOT going backwards" (when the rheumy told me to do a quick taper). I also refused the methotrexate - may revisit that if I can't get below 10 mg, but will decide that when I get to that bridge. Now he leaves me to my own devices.

I was one who needed to go up to 30 mg at 6 weeks last summer to really get better, (had flares at 22.5 mg, now a minor one at 13 mg), so don't despair the higher doses, it won't be forever. I view Pred as my savior, really.

Please keep up updated!

[August7 in reply to sidra1968]

Thanks for that, appreciate the advice😉

[arvine in reply to PMRpro]

My WBC has always been flagged as highas well monocytes and leukocytes, crp and esr have never been out of norm , my GP, and reuhmy have just put down to caused by prednisone, even though I have been under 10 mgs for iver a year, now still tapering, although in much pain, which rheumy and dr say arthritis and need to get off pred, just started taper from 4 to 3 1/2 couple weeks ago, down to 3 1/2 for about 5 days now, still in much pain, joints and hands , Im lising or have list confidence in my drs, very skeptical about diagnosis and altheir advice

[Hidden]

Hello, welcome to the forum, you have a lot on your plate. I am also a newbie, 7 weeks diagnosed and not long joined the forum but I feel so safe here and so can you. While you wait for others to see your post and welcome you, have a very gentle hug 🫂

[August7 in reply to Hidden]

Thank you so much 😊 Really kind of you and I can see what you mean from the posts I’ve seen

[DorsetLady PMRGCAuk volunteer]

Hi,

Totally agree with PMRpro that you have been badly let down by your medics, and that you probably do need a higher dose to get your PMR under control. You may not have wanted Pred, but that is the only thing that is going to address your problem and give you some quality of life, but it does need to be a high enough dose to do that, too little and it’s a waste of time.

I appreciate it’s difficult especially as you are on your own, and with your son’s issues , but you do need input from your GP. There is no way you should be waiting until November for help.

Do you have anyone that can advocate on you and your son’s behalf.. after all both of your lives are being impacted by the lack of undertaking of your situation.

[August7 in reply to DorsetLady]

Hello DorsetLady and thanks for your advice. There is no one I can think of who can advocate, I feel I should be able to do this. I find that when I am in front of the medics I seem to become totally subservient and offer endless apologies which is so silly I know.

The waiting list for a GP app is up to 8 weeks and there are only 2 of them that seem to have taken the symptoms seriously, (although both wondering why I hadn’t achieved relief of pain on 12.5 mgs🤔).

I also developed haematuria and was fast tracked for investigations which showed all to be clear except for scarring on one kidney which I was not aware of. One of the GPs had written off the urine result as normal but luckily another picked it up and actioned the fast track. There are a lot of loose ends with the raised monocytes and also I had a vitreous detachment of the right eye back in December when the PMR was still being debated. I notice when I have a flare up my vision in that eye gets hazy and the sight in that eye has dropped ( I have booked an optician to get that checked out myself).

Headaches are something I live with (past acoustic neuroma removed 2003, luckily benign but left with neuropathic pain) so it is difficult to discern if anything different is happening. I apologise for the long history, do not wish to sound dramatic but it makes up the story. Hence the GPs look at one small bit due to time constraints but not the picture as a whole. Give me the tools and I will get on with it.

However, this site has been heart warming and I do not feel on my own, so many many thanks and I wish everyone a productive safe positive journey with your symptoms of PMR.

[PMRpro Ambassador in reply to August7]

"both wondering why I hadn’t achieved relief of pain on 12.5 mgs🤔)."

Could that POSSIBLY because it isn't enough after it all being ignored so long? Or even that pred isn't the ideal medication? They all sound out of their depth - and the rheumy is a poor one who isn't curious enough to investigate.

[August7 in reply to PMRpro]

Agree, I have no faith in him. Unfortunately there is no one else so hopefully I will be able to present him with the information that all you fabulous gurus are giving me x

[PMRpro Ambassador in reply to August7]

You COULD ask for a transfer elsewhere because of "breakdown of the relationship" - no use if you don't trust him. Where are you?

[August7 in reply to PMRpro]

Cornwall! We don’t have much choice. Travelling to Plymouth would not be possible ( but good idea if I was living up country)

[PMRpro Ambassador in reply to August7]

No, you don't!!! You know there is a support group? And I thought they had a good relationship with a rheumy who has spoken at their meetings.

[DorsetLady PMRGCAuk volunteer in reply to August7]

, I feel I should be able to do this

You may do, but we all need a bit of morale support at times... could be just a friend who knows your personal circumstances, they don't necessarily have to say anything, but just be there. That very often alters the doctors approach.

Your GP surgery sounds dire... so sorry for you. Do hope you can get some sensible answers from the optician.

Please don't ever feel the need to apologise on here.. 🌸

[August7 in reply to DorsetLady]

I have a feisty friend …maybe I should take her😉

[DorsetLady PMRGCAuk volunteer in reply to August7]

Probably be a good idea…😊

[PMRpro Ambassador in reply to August7]

We have our uses ...

[PMR2011 in reply to August7]

Hi August7, sorry you are going through this. I agree with others you have been ignored at best and badly treated at worst.

Hearing you say that the sight in one eye changes with a flare and that you live with headaches and that your PMR symptoms have been going on for a while makes me worry about GCA. A medic who listens and is willing to put all these pieces together is in order.

In the past I’ve written down my thoughts, concerns and questions so that during the apt if I get tongue tied I have something to refer to.

Hope this gets sorted for you soon!

[August7 in reply to PMR2011]

Thank you. I feel a hundred per cent better thanks to all the encouraging posts, not alone anymore

I will make a list and I will take a friend with me in November. Shall also mention this advice to the nurse when I speak to her next week ( no face to face appointments) and the guidelines for prednisolone.

[DorsetLady PMRGCAuk volunteer in reply to August7]

When you mention advice - say it came from the charity [which is essence is does] they can get a bit iffy if that think it’s just some random group on the internet!

[Poshdog]

My heart bleeds for you. Dramatic I know but it really does. I too have an adult autistic son who depends on me. Many times I have felt like you and my son's needs have kept me going. It does get better and this wonderful site helps enormously. I am in year 8 of PMR, now on 3.5mgs.Sending you many hugs and best wishes. Fight on, you will get through it xx

[August7 in reply to Poshdog]

Poshdog, thank you so much for those kind words. I am quite overwhelmed with the responses and it has given me hope. It is hard when someone relies on you so much and you feel your body is failing you and the sheer terror of what the future could hold.

Thank you and very best wishes to you and yours😘

[Poshdog in reply to August7]

🥰 keep posting xx

[August7 in reply to Poshdog]

👍😘

[Louisa1840]

Oh August7, I along with everyone else on this site, I am sure, hold our hearts out to you. You are so brave! I don't know what I would have done without this wonderful site. I have no advice or suggestions, Just comfort and encouragement and praise for you. You are doing a wonderful job......

[August7]

Louisa1840 you are more than kind, Thank you! I am certainly not brave☺️, but I gratefully receive your words of encouragement. It is a wonderful site and so glad I posted